Saturday, April 1, 2006

day 280 - what happened to miss independence?!?

have i explained how chemoangels came into my life?

i know i have new readers and i try to stay away from continuing a story without explaining whats going on (i hope that makes sense .. my brain is feeling scrambled today hehe)
 
if you have no idea what and who chemoangels are, please go to chemoangels . com to read about the wonderful things that these volunteers do :)

i've been hooked up with chemo angels for months .. i have 2 angels, Erika and Sandy, who are never ending in their support and encouragement .. i receive cards, flowers and small gifts from them on a regular basis .. they've made it fun to go to the mailbox cause i never know what i'm going to find LOL

its been a delight .. pure delight ..

when i got out of brain surgery (for the record, i had a mild seizure on friday march 3rd, was taken by ambulance to the hospital where it was discovered that this "question mark" that had been showing up on my brain scans were now 3 brain tumors .. one (left side above my ear) had grown to 2 inches in about 2 1/2 months

what i've realized is amazing is how my wonderful friend Tracy just happened to be here at my home during my first seizure (i didn't even know what it was, i just told her that there was something wrong and to please call 911)  the 2 seizures i had at the hospital within hours after i was admitted, i was still in the emergency room .. my curtains were closed .. the door to my room was only open a few inches and my emergency button was completely out of reach (not that they would have responded in a timely manner haha) but i tried for at least 10 minutes to get anybody's attention after my seizures .. when i finally got my nurse's attention, he told me there was NO way i had a seizure .. but thats another story eh

when i had my 4th seizure, after the surgery, my physical therapist was with me .. i knew enough by then to know that something was wrong again so i told her "something is wrong" and laid down and prepared myself for another seizure .. she ran out and got my nurse (and about 5 other people) and held my hand during my seizure (which lasted about 2 minutes) i was kinda amazed afterwards that there was nothing anybody could do to stop the seizure .. they just all stood around watching, asking me questions that were impossible for me to answer .. and afterwards, everyone just kinda disappeared .. except my therapist that is (what a wonderful lady!!)  she understood how afraid i was of being left alone .. even though nobody could do anything, i didn't want to be alone if i had another seizure .. so i called my son, explained that i had another seizure and didn't want to be alone .. and she sat with me for the 40 minutes it took my son to get to the hospital !!

(and just in case anyone is wondering .. i am writing this all down because i forget sometimes what i went through .. for the longest time, i had no idea when i went into the hospital, when my surgery was .. i basically had to reconstruct the timeline of what happened when LOL  people would ask when i had brain surgery and my answer was always "i have no idea" .. it helps me remember things when i write them down :)

so .. after tests and more tests, it was decided that surgery to remove the largest tumor was the best thing for me .. i had 2 more seizures while waiting for surgery

my surgery was on tuesday march 7th and lasted (i think) for 5 hours .. Dr Jason said it went as good as it could have and there were no complications :)

my release was scheduled for friday march 10th (i think) but i had yet another seizure .. this one caught everyone off guard .. even though they are very typical (messing with my brain, the swelling .. etc) makes it very common for my brain to seize up .. i still hate them though !!  i hate them like you wouldn't believe !  i know they're mild, i'm remain conscious .. i don't thrash around or anything, i just kinda stiffen up and my arms and legs curl up to my body .. i can't talk and i am sooooooo sore afterwards .. i can't believe the amount of energy these seizures sap from me

but anyway ..

i was put on seizure alert at the hospital while my release was postponed .. i got the news sunday, march 12th that i could go home !!  ask me how scared i was !!  this is difficult to explain but i felt like i was living my life anticipating another seizure .. i was afraid to go out in public .. of course, i can't drive anymore (legally for a year after my seizure) but i wouldn't anyway because of safety reasons 

any notion i had of regaining my independence had flown out the window .. if you know me you'll realize what a difficult reality this was for me to accept .. i am still fighting it .. i don't want to dwell on this aspect, but i will admit that it has been frustrating being limited and i've tried so hard NOT to push myself too far and be aware of my physical and mental dependence .. i get frustrated because there are times that i need help and i have NO idea where to get help !!

things like rearranging my bedroom furniture .. when my mom stayed with me for 2 1/2 months (i think hehe) i had the 2 maintenance men come and move my bedroom furniture around so that i could put part of my sectional sofa and a table in here for mom .. when mom left, i wanted the furniture moved back out, so i asked my son to take move the furniture back out before i came home from the hospital

well, my son thankfully moved the furniture, but the position of the bed leaves me less than a foot to squeeze through just to get into bed .. i am getting tired of having to squeeze through !!  i called the maintenance man to try to get some help but after standing me up twice, i gave up on asking him for help

i know that if i ask my son again that i will stress out .. he and i just do things differently .. i move all the small furniture out of the way first, move all the stuff off the dressers so nothing gets broken, i've made a drawing to make sure the furniture will fit where i've planned, i take the drawers out of the dressers so that they're easier to move .. ya know, kinda organized .. (can you say anal? LOL)  my son has a tendency to throw caution and planning to the wind and usually ends up damaging something simply because he's not careful (which is OK .. i'm not faulting him really, i am just aware of how he is and i really don't want my stuff damaged!!)

i don't know why i'm going on and on about something so silly .. its just one of those things that i've wanted taken care of since i got home on the 12th and i've just about run out of patience trying to figure out who i can get to help me since i can't physically do it myself .. i try to only ask favors from people if its really important .. i don't want to be using up all my favors too soon hehe

my daughter is home for a few days :)  my son is out on a dirt bike/camping trip/memorial for a friend thing with his dad .. i didn't want to be left home alone so i asked my daughter if she could spend the weekend with me .. she rolled in around 11 pm last night after a dance at the rec center and promptly went to bed .. i find myself fighting not to go in and check on her like she's still a baby hehe

i wish i were in better spirits .. i know its easier for her when i'm positive and upbeat ..

ya know .. this is NOT what i had planned on writing about in my journal today lol  i started off wanting to thank all the special assignment chemo angels, then i was going to talk about how i (this is hard to explain) am slowly changing how i feel about accepting gifts from people .. but now i've worn myself out and its time to take my pills and eat breakfast .. i wish i would have remembered to ask my son to make me a protein shake or 2 before he left .. i really am low on energy and drop just about everything that i try to pick up !!

thanks for coming back and sharing my head noise !!
 

13 comments:

yakima127 said...

The Chemo Angel program is a wonderful one!  I am happy they are being good to you!  Jae

thinkingoutloud said...

I'm commenting on a few entries here:)

You have given me such insight.  You have no idea.
I was curious as to what happens when people have those type of seizures.  Interesting.  And yes scary.  I can understand your fear but at least now you know what you are facing.

Putting off the PET scan and some therapy is a good idea.  You obviously feel the need for a break and some rest.
I'm glad your daughter is with you this weekend.  I know that makes you happy:)

Hopefully when your son returns he will straighten out your bedroom.
Enjoy the Joss Stone CD.  That girl can sing!
Have a peaceful day-
Love ya'
Niki

elleme2 said...

Dependency is soooo difficult when you've fought hard to gain and maintain your independence.  For the fiercely independent, it's difficult enough to just accept help but actually ASKING for it is a quantum leap.  But you do need people, Pam, and you deserve the help.  Ask away!  Don't know who started the chemoangels, but they deserve a medal for such a splendid idea.  Take good care of yourself.

lanurseprn said...

Hi Pam. Take it from a nurse...there is NO excuse for how you were treated by your nurse in ER.  I could just backhand that nurse for saying that to you!!  

You are doing so good, Pam. Think about it...you had BRAIN surgery just over 3 weeks ago!  You are doing great!  I sure wish I lived close to you so I could help you with things.  But, thank God for your children who are there to help.  
And thank Goodness for Chemo Angels!  
Love ya Pam.......Pamela (LAnurseprn)

lgonzalez220 said...

Pam, thinking of you often.  Sending hugs from CT.  Keep up the good fight!!!
~Laurie

thegirlnexdoor77 said...

Your treatment at that hospital was uncalled for....You should sue their incompitant butts....Takecare and get some strength this weekend and enjoy the visit with you daughter...Hugs...TerryAnn.

onestrangecat said...

wish i was there to move the furniture for you.  maybe your daughter can or maybe the ex when he comes to pick her up.

thanks for keeping us up to date on things.

you're in my prayers

Kathy

dornbrau said...

Hope you're feeling better after a little breakfast.
I'm eagerly waiting for my son Gabe's visit next month.  I know I'm going to baby him, I hope he doesn't mind because I'm going to do it anyway.  Hey, its our job as moms, right?

ajquinn354 said...

Pam you are doing amazing for just having your surgeries not long ago.  How great the chemo anhgels have been for you dear. Just wish all of us here in Jland that care about you could come and be with you and help you out with the things you need done, like getting your bedroom back in shape dear.  Don't worry about your brain feeling like it is scrambled today, we understand your words you typed just fine and think you are doing just fine after all you've been thru recently.  Keep the spirit dear, we all care and love you....AJ

candlejmr said...

DAMN...My first thought was, "where the heck does she live, I will come and move her furniture for her, no problem!"  However, then I read your bio and you are in California...and I am in NEW JERSEY.  Sorry.  I thought I could help!  (LOL)

I am going to check out those Chemoangels.  As long as you don't have to have had cancer, I think I am going to volunteer!  I can see the fantastic lift they give to your day!

Jeanne

mzgoochi said...

Hi Pam, I caught myself holding my breath when I was reading about the seizures. I feel so bad for you, for being alone and unable to ask for help in the hospital. For being scared. (((Pam))) I wish I could come help. Know that you are in my thoughts daily and I'm always here reading your updates.
God Bless you and keep you.

Lahoma

artloner said...

Hey Pameo, If you need something, or something's bugging you, write it down here. You never know what we can do if we put our heads together.  I may just have to give you a ringy-dingy sometime tomorrow.

xoxoxo,
andi

suzypwr said...

I wonder if a huge calendar would help you? You could write down things on each day, and have it at a glance if you needed a reminder of what happened when. Flylady.com has them usually, but could be out this year already. Maybe poster board sized paper, your daughter could make the lines for you, set up a few months for you so you could see if it helps at all? My memory isn't so hot, so I keep things down in a small calendar that goes every where I go. My brain on paper.

You don't sounds so confused today really, most like you have a few things on your mind at the same time :)

xoxo